• Announcements

    • Joelf

      Upgraded Sclero Forums!   05/18/2017

      Welcome to the Upgraded and Redesigned Sclero Forums!!   Our Forums are even better and more up to date than before.   Happy Posting to all our Members!!
summer

For those with motility/bowel issues

12 posts in this topic

I was just wondering, those with slow motility/ bowel problems, what foods do you eat, or avoid. Do you have a high fibre diet, or do you stay clear of wholegrain foods?. I have been having problems with the above for some time now, it has come to the stage that I rarely eat, and just have liquids/soups. I have seen a GI specialist which hasn't really helped me at all and can't offer me any solutions. My rheumatologist has had me on Maxolan, which didn't work and also Motilium. I am currently not any medications for my motility problems, but need advice from others that have experienced this.

 

Thanking you all in advance

Summer

Share this post


Link to post
Share on other sites

Hi,

 

I make sure I eat enough fiber. I stay away from cheese or any constipating foods. My main problem is constipation, and if I have to take pain pills then I'm really in trouble. I try to use Miralax on a semi/regular basis.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Pamela,

 

I don't suffer from constipation or diarrhea, it is quite normal, I just pass small amounts at a time, up to 20 times a day every 2nd or 3rd day. I also have chronic cramps,nausea and sometimes vomit. Very occasionally I get diarrhea at times.

 

Summer

Share this post


Link to post
Share on other sites

Hi Summer,

 

Have you looked at the page on Gastrointestinal Involvement? There is a section specifically on Bowel problems.

 

I find my best bet is to eat plenty of fruits and vegetables and stay away from too many gluten containing products. I don't have a gluten intolerance, so far as I know, it's just that breads and many cereals cause me problems.

 

There is another thread running on Bowel Issues that you might want to read.

 

Best wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

Share this post


Link to post
Share on other sites

Dear Summer,

 

Please keep in mind I have no medical training. I once tried to pick up a PDR (Physician's Desk Reference) and it was too heavy for me, so I gave up on all medical ambitions on the spot.

 

If you haven't already, I'd suggest you consult a scleroderma treatment center for evaluation and treatment of all gastrointestinal issues. As it happens, some people with scleroderma have died after increasing fiber in their diet, and gastrointestinal dysfunction is a significant cause of death in scleroderma. Fiber may be the answer for some of us, but a low-fiber diet may actually be the ticket for others.

 

Additionally, you might be interested in our page on Gluten Intolerance, which is a possible cause of scleroderma and many other autoimmune diseases and can greatly worsen any existing g.i. issues, as well.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

Share this post


Link to post
Share on other sites

Andyko ...oh no not Normacol...yuck!!! I used this many pre sclero years ago and just the though of it makes me feel ill. Those awful nasty tasting little pellets trying to swallow them...gag...gag...gag...but it did work.

 

Summer, sorry you're having this issue and I have nothing to offer other than can you get a different GI doctor as they are actually supposed to help! They may not have the expertise for sclero matters and I don't think you should just be left to get on with it.

 

Take care.

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Thanks for all of the replies.

 

Shelley, all of my specialists are at a major hospital and they are familiar with scleroderma. I had a colonoscopy nearly two years ago, which showed mild diverticulitis, I also had a number of biopsies taken. I tested negative for gluten intolerance and irritable bowel syndrome (IBS). I am due to see my rheumatologist in a couple of weeks, hoping I can get some answers then.

 

Summer

Share this post


Link to post
Share on other sites

Hi Summer,

 

I have the same poblem with my bowels. They finally diagnosed me with a bacterial overgrowth in the small bowel. My doctor prescribed antibiotics and that has kept things under control for over 2 years now.

 

I also agree with some of the others when it comes to high fiber, it really makes me sick.

Share this post


Link to post
Share on other sites

Hi Joel,

Thanks for replying to my post, I have had bacterial overgrowth before, I thought you had to have constant diarrhea all of the time with BO.

Maybe I'm wrong...... maybe someone will chime in soon.

 

Summer

Share this post


Link to post
Share on other sites

Hi Summer,

 

You have gotten some great advice. I wanted to add a couple of other things. I have dealt with substantial motility and bowel issues over the last 3 years. Unfortunately, our bodies are so unique that what might be a bad food for your body is okay for mine. What is good and bad is unfortunately different for everyone. It took me a long time to figure this out.

 

The person who made this clear for me and has been instrumental in getting me on the right track with my nutrition is not a doctor, but a nutritionist. I see her once a week and it has made a world of difference,.

 

I am on a diet right now where I was actually given a blood test that analyzes my body's reaction to various foods. I actually have a card that is color coded. Green foods are okay. Yellow I have a mild reaction and red I stay away from. Initially I could only eat a small variety of foods. As time goes on you add a new food each day keeping a food log which tells you if the new food has caused you any problems such as diarrhea, bloating, abdominal cramps, etc. It has really worked for me. It is very restrictive but the change in how I feel is worth it. It shouldn't be done, however, without the assistance of a medical professional.

 

Best of luck.

Share this post


Link to post
Share on other sites

That has long been a problem for me and nothing I tried seemed to help. I had a gastric emptying test and failed it miserably. So my problem is gastroparesis. I don't know how sclero fits in this picture for me. I am taking a prescription medication for chronic idiopathic constipation and I get fairly good results with this. The problem now as before is that sometimes it's constipation and sometimes diarrhea with no control. yuk. I have tried all the different diet ploys and have not found anything to be better than anything else. Fiber type stuff does not help. Recently I had a CT scan of my lungs and there was a line that said there was a large amount of fecal material. I knew I was full of it but that was surprising.

I think some of this is caused by birthdays! I will have my 76th next month.

Betty

Share this post


Link to post
Share on other sites

Hi Summer,

 

This is what has worked for me. I have taken a motility drug for five years now, two on normal days and four on bad days. I have given up pastas, cereals, high fat foods and stick with fresh foods for the most part. I"M NOT PERFECT by any means. Cereals and pastas and even too much bread just give me problems now and any processed foods or high fat foods give me a lot of motility problems. When I have bad days for flare ups, I decrease my fiber intake a lot, some days down to liquid only and very small amounts of food. I don't even like to drink a lot of water on those days.This is what has worked for me. I hope you find your way as it makes life a lot easier.

 

Susie54

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now